A study to develop a quality of life questionnaire for bile duct and gallbladder cancer

Cancer type:

Bile duct cancer

Biliary tree cancers

Gallbladder cancer

Status:

Results

Phase:

Phase 3

This study collected information to help researchers develop a questionnaire to assess the quality of life for people with bile duct Open a glossary item or gallbladder cancer. This is sometimes called cholangiocarcinoma.

As well as testing how well new treatments work, it is important that doctors find out how treatments affect you. To do this, doctors design questionnaires to ask people about how they are feeling and what side effects they are having from the cancer and the treatment. These are called quality of life questionnaires.

In this study, the researchers asked people about the symptoms or problems they had as a result of their illness or treatment. They used this information to develop a questionnaire to assess the quality of life of people with bile duct and gallbladder cancer.

Summary of results

The researchers were able to develop a questionnaire that was accurate in assessing quality of life and that people with bile duct or gall bladder cancer found acceptable.

There were 3 stages to developing the questionnaire.

In the first stage the researchers looked at the quality of life questionnaires used in other cancers to identify issues and questions. They identified 47. They then asked 101 people with bile duct or gall bladder cancer and 6 health care professionals to rate the importance of these 47 questions.

In the second stage the researchers put together the quality of life questionnaire. They included those questions that were identified from the first stage as the most important. There were 23 questions.

In the third stage the researchers recruited 52 people with bile duct or gall bladder cancer form different countries around the world. They interviewed them to find out what they thought about the quality of life questionnaire. They also completed a short questionnaire of 6 questions. It asked if any of the questions in the quality of life questionnaire were difficult, annoying, confusing, upsetting, intrusive or not relevant. From this the researchers took out 2 questions. This left a total of 21 questions in the quality of life questionnaire.

The researchers concluded that these 21 questions were an accurate and acceptable quality of life questionnaire for people with bile duct and gall bladder cancer. They want to confirm this in a larger international study.

We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.